Tag Archives: illness

You’re never given more in life than you can cope with … you’re so capable, you’ll do it

All lovely, life-affirming sentiments, intended to bolster us up and make us proud that we are somehow ‘battling’ MS.

Well, here’s the secret:

There is no battle.

All this military talk, of battles and fighting. Did you ask for this? Probably not. So, there is no battle and no fight. Most battles/fights are fought with both sides having some kind of previous information, i.e. ‘There will be a fight tomorrow, be there or else, and bring your flags and biggest blokes, ta. P.s. your trench looks great’.

MS does not fight. It invades, when you least expect it. It inveigles itself right inside your life before you even have time to draw breath. So where is the battle in that? It’s like a tug of war with the winning team walking casually away pulling the rope while you’re still in the pub having a Pimm’s and catching up on the darts or Putin. Or something.

Going through the MS diagnostic process, I heard all of this. I was pushed into a position of ‘Fighter’. Quite suddenly. I wasn’t coming to terms with an incurable disease, I had to fight it. Erm, how exactly?

Now, on the cusp of my fifth anniversary of being diagnosed with MS, I realise I have never been a fighter and never will be. I run away at the first sign of trouble, which is probably why I held an extended MS pity-party for a couple of years, wailing ‘It’s not fair‘ to anyone kind enough to listen.

We all deal with MS in our own, unique way. It is, by it’s very nature, a unique illness and no two people with MS are the same. It is impossible to fight an illness which hijacks your immune system; we can merely accommodate the symptoms with medication.

According to so-called internet experts, my MS is due to familial connections, growing up in Scotland, having Nordic genetics, drinking Diet Coke, chewing gum, being exposed to life.

All well and good – a bit like closing the door when the horse has bolted?

Believe me, if you’re fairly newly-diagnosed, please don’t feel under pressure to ‘fight’. Allow yourself time; time to grieve, time to feel sorry for yourself and most importantly, time to realise that MS just … happens. It is not your fault and you do not have to become a flag-bearer.

Look after yourself. I think all of us living with MS could do well to remember this?

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In the news today, Macmillan Cancer Support reports that most people cannot financially afford to have cancer.

They estimate that the illness costs around £760 per month, leaving the average family with a shortfall of £270 per month, due to increased living costs, such as extra travel, support and loss of earnings.

I could be wrong, but I think this pretty much applies to MS too – definitely so in my case.

Even before diagnosis, I had to drastically cut my working hours and now, although my health has stabilised somewhat, MS still throws plenty of curveballs my way, so much so that I cannot ever see a time I will be working 35 hours a week.

When I was really ill, I relied heavily on expensive ready-meals and takeaways instead of my usual prepared-from-scratch meals. I also took a lot of taxis to hospital and back, unable to cope with the stress of driving, parking, fighting with the ticket machine (the one at my hospital is sadistic) and stumbling to my appointments. I would feel tremendously guilty at not being able to do much with The Teenager so I would entice him with an extra tenner here and there to enjoy himself with his friends. It all added up.

So not only do we have to cope with the devastating emotional loss and bereavement any illness brings, we also face the very real fear of losing our homes, our livelihoods and the ability to look after our children in the way we would wish.

As a single, divorced parent (small violin please), I have no partner to fall back on. I have to earn a wage. That responsibility is frightening and keeps me up at night. I joke that most of my furniture is from Gumtree, but I’m not far wrong. I rummage through charity shop racks, putting aside the money I save so that The Teenager can have a few nice brand-new t-shirts. The cat went on strike when I swapped her food to supermarket own-brand but she learned to love the cheap biscuits, although she brings home more decapitated mice nowadays.

What is the solution? Is there one? If we give up work, we’re scroungers. If we stay in work, many of us are made to feel unwelcome and a ‘burden’, needing too many adjustments.

One thing I must mention though, is that the National Health Service remains free in the UK. I can’t imagine how much I have cost the NHS over the last four years. How would I have afforded the cutting-edge disease modifying drug I had access to, if I was living elsewhere?

But what does the future hold? Will we still have an NHS? What will happen when I’m too old to work but too young to retire? One thing is clear, illness is expensive. Can you afford it?

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If you’ve never heard of Talcott Parsons, you’ll almost certainly have felt the crushing effects of his ‘sick role’ discourse within medical sociology.

He’s the bloke who argued back in 1951 that being ill means you enter into a state of ‘sanctioned deviance’ and are therefore no longer a productive member of society. And there’s more.

My wicked deviance (for I am legally disabled) must then be ‘policed’ by the medical profession. In short, I disturb the normal social function of society. Chortle. Me?

I’m writing about this as I seem to fall into the camp of an Invisible Illness Unless I Do Something Spectacular, such as fall flat on my face or play pinball with walls. When my condition is obvious, there is an allowance so long as I play by the rules.

Yet when it’s invisible (extreme fatigue, brain meltdown, endless nerve pain), I’m either faking it or playing up to it. I can’t win. I’ve variously been told to give up work, to find a ‘proper’ job, to go on benefits, to stay at home and watch telly. Wish they’d make their minds up.

I’ve recently heard, ‘but you’re taking a Master’s, you can’t be thaaaaaaat bad’. The underlying insinuation being ‘oi you lazy sod, no more malingering, be more… productive rather than floating around in hand-knitted scarves writing about trees and ladybirds’.

Regular readers will know two things about me: first, I struggled badly during the last two years of my degree as I was going through a perpetual cycle of relapses. Second, I no longer have a set career path for a whole host of reasons. So why not push myself into something that will challenge me on every level? In all honesty, it has taken me to the limit. The emails between me and my tutor confirm this – full of doubt, fears of failure and a sense that I really had aimed way too high.

I have since settled down into academic life and my tutor is no doubt relieved not to have to handle any more tracts of self-analysis. And they were pretty badly-written streams of consciousnesses, natch.

So I challenge the sick role wholeheartedly, as have many critics. I am a productive member of society. I am single-handedly raising a well-rounded (and opinionated) Teenager. I run my house well. The cat is always fed. I work. I study. And I always turn up on time for my monthly blood tests at the doctor’s surgery. Early, in fact.

Yet there still exists in society a great desire to hold onto this sick role theory. It suits them; we can be parcelled and put to one side ready for them to cut our much needed support and mock us. We are in the stocks and right now society is taking great delight in chucking everything rotten at us.

Is it just me or does dear Mr Talcott bear a passing resemblance to someone else? Must be the moustache.

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Regular readers will know I kept a close eye on my friend Tom. His 90th birthday would have been less than a month away.

The only person to send me a Valentine’s card in the last three years, Tom had a particularly special place in my life.

We compared ‘symptoms’ notes and medication, we talked about my M&S (his favourite shop and my least favourite illness) and he made the best cup of tea this side of the border.

After a final frantic few months when he was admitted and discharged over and over at the nearest hospital, he passed away. Peacefully, I hope.

Today was my chance to say Goodbye properly. I came with my mum and The Teenager. My mum visited Tom when I was poorly after the Campath treatments and got to know him well. The Teenager last saw Tom on Christmas Day, when we popped in to see him.

Funerals. So often depressing and lifeless, we were blessed to have a twinkly-eyed Canon take the service. There were six of us.

But, you know what? It really didn’t matter how many people Tom had at his funeral. He was loved. Most of his contemporaries had died. This was The Teenager’s first funeral and he was moved. He sang the hymns with gusto (proud) and listened attentively to Tom’s life story.

The saddest moment had to be when the curtains closed Tom’s coffin from us. He was gone. He won’t be forgotten. But as Josephine Hart, the wonderful novelist said, we die twice. First, we die. Then we die a second time when no-one is around to mourn us.

With this in mind, we talked about legacies. What can we do in and with our lives that will leave a lasting legacy? How can we live on?

So, The Teenager is reflecting upon life and death. They are intertwined.

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Not the best week for a blog that’s supposed to show the lighter side of life with MS.

To cut a long story short, I had to take my mum urgently to A&E early this morning.

She’s chronically ill. It scares me. I may be 40, but I’m not ready to face all this. My mum has been my support system throughout the whole MS story and I feel kind of ….rudderless?

Don’t get me wrong, I don’t rely on my mum for physical help, it’s the mulling/chatting over stuff that has seen me through the last two years. She’s been there every step of the way. It pained her to the very core to see yet another family member become diagnosed with this disease.

She nursed my father through PPMS and was only 28 when he died.

And now I am the one being strong, reassuring and forward planning. It’s not easy. I feel worn out and exhausted. But in a strange sort of way, I have found some kind of strength, from somewhere. My mum needs me.

This post hasn’t been edited. I’m writing as I find. I just wanted to explain what’s happening. I’m not the sort of person who can skip over stuff. I’d love to write about stuff that happened recently that made me laugh – and there’s been plenty. But right now, I’m in adrenalin mode. I know I’ll collapse at some point, just not right now.

I’m waiting for my sister to take me to the hospital. I’m shaking too much to drive.

Wish me luck. I need my mum. I’ve just heard she’s staying in overnight, at the very least. I’m going to hold her hand and tell her I love her. Because I do.